I’d like to begin by stating that I am not a physician and don’t presume to make suggestions of any medical weight, but merely aspire to help point people in some direction, who may be lost/overwhelmed or just starting out on their journey to wellness. I am writing this segment to share my experiences and hopefully bring more awareness to the subject of vector-borne illnesses and the real affect they have. I say vector-borne illnesses rather than tick-borne, because I feel it covers the greater extent of illness that is actually out there and not talked about in mainstream circles.
Our journey began before we even knew we were on the road with the “Great Impostor.” My daughter was seven at the time and I was thirty-six. I believe in getting fresh air every day and so every day I made sure we got outside to play and enjoy nature. We played in the grass, under the trees, ran through the field by our house with our Doberman Pinscher, and sloshed around in little streams. One day after having a great time outdoors the previous day, my daughter came home from school presenting with an all-over redness to her skin, said she felt very tired and had a low-grade temperature. I made an appointment for her to see her pediatrician the next day. They nonchalantly said she probably had a touch of a virus that she got from school and it needed to ride its course.
A week or so later while Michelle seemed to be feeling better, I awakened one night in excruciating, all-over body pain. It felt like my body was made out of glass, and it had shattered into a million pieces. I struggled to walk down the stairs to the kitchen, where I took some pain medication. I went into the bathroom after and when I looked into the mirror horror struck me. My skin was a ghostly white with a red lacey rash all over it. It covered my entire body. I thought I was dying. The next morning, I went straight to Urgent Care, where they did a bunch of tests. Upon seeing me, the doctor was fearful that I might have Lupus or some other auto-immune disease. But no, the tests all came back clear. After I explained how my daughter had been sick recently with similar symptoms, she determined that I probably had 5ths disease, which is a highly contagious childhood ailment. Being a virus, it had to clear up on its own. I went home thinking my daughter and I were victim to a common kid’s sickness.
We both got better and thought nothing more of it. But over the next few years Michelle and I began having many odd ailments that left us feeling run down and not ourselves. Michelle would get strong shooting abdominal pains and upset stomach. It seemed odd that a young girl would feel nauseous all the time. She also would get random hives on her body and an overall sense of malaise. I mentioned this to her pediatrician whenever she had her appointments, but she always told us that these were normal occurrences. She did suggest that she try removing milk from her diet to see if that made her feel better. We did but nothing changed, so she continued with eating diary.
During these years, I was having my own issues. I would have bouts of extreme fatigue where I would need to take a nap, and in the mornings especially, I would have great difficulty walking down the stairs. My joints were so stiff and painful. I also had a lot of digestive issues that affected my daily routine. And I wasn’t sleeping. I told my general practitioner about my ailments and how anxious and depressed I felt. I convinced her to do some bloodwork to check for Lyme, Celiac and thyroid levels. Everything came back negative. So, she suggested I see a therapist. I told her my anxiety stemmed from the pain, not the other way around. She ended up referring me to a rheumatoid arthritis specialist upon my insistence that my joints were causing me an unusual amount of pain that I felt was not normal for someone my age.
The rheumatoid doctor did some more bloodwork on me and examined my joints. In the end, she told me I looked perfectly normal, but if my painful joints got worse to see her again. I never did. Michelle and I continued to muscle through our ailments and live a positive life. My issues increased. I started having numbness and tingling in my feet, followed by achy foot pain that caused me agony whenever I walked, particularly after sitting in the evening from a long day.
And then--My husband started with exhaustion, night sweats and night terrors that would keep him awake at night. He felt as though he couldn’t catch his breath. It was as if someone had stolen the oxygen out of the air he tried to breathe. His blood pressure was also high. Okay, now I knew something wasn’t right. Our family was sick. Sick of what?
One night my husband came home and was telling me about a coworker who had been experiencing similar symptoms for years. He was excited to tell me that they figured out her aliment. Babesia and Lyme. Could that be our cause?
A few days later at Tae Kwon Do (It’s a wonderful activity we have done as a family for the last fifteen years!), one of the student’s mother was telling us about their daughter who had been gravely ill with digestive issues. She was so ill they had to take her to a specialist in Boston for possible surgery. They wanted to remove some of her intestines! But her mother knew there was something not right about that plan of action. I don’t recall the details of her search for a new answer, but long story short she found a Naturopathic practitioner who performed more bloodwork on her sick daughter. She used a different laboratory than the local hospital called Igenex, a laboratory that carries out some of the most progressive lab studies available. Those lab results turned up positive for Lyme disease, or better known as Borrelia burgdorferi. I knew my family needed to see this doctor after ten years of struggling with our health. Immediately!
The doctor was the most engaging and empathetic doctor I had ever gone to. She literally saw us as a whole working package and not a bunch of symptoms to be dissected into each of their own categories, like how our other doctors seem to deal with us. She tested each of us based on the symptoms we presented. My daughter had Borrelia burgdorferi, I had Bartonellosis and low natural killer cells which are a type of lymphocyte, and my husband had Borrelia burgdorferi and Babesiosis. Little did we know what was in store for us. Yes, we had a diagnosis, but now for the hard work ahead to get back to some semblance of health.
We had to change our diet. Evidently, sugar really is poison to some extent. Yes, you need some in your diet, but the American diet has exorbitant amounts. No sugar except for honey and maple syrup. It causes inflammation and we needed to get our inflammatory processes under control! Fresh fruits and veggies, no processed meats and no junk food! You are what you eat after all. And then for the slew of herbal tinctures: Cat’s claw, Japanese knotweed, Cryptolepis, Cordyceps, Red sage, Baikalskullcap, Samento, Jamaican sarsaparilla root, Pau d’arco, Burdock, Thistle, Mullein, Echinacea, Stevia and Artemesia to support detoxification and elimination of unwanted microbes. OMG! And two different antibiotics, one in the morning and one at night, that rotated after several weeks because it keeps the bacteria from getting used to fighting the same medicine. And then vitamins: calcium, B-12, vitamin D. And yogurt to put good bacteria back into our bodies. Yikes, that’s a lot of pills and whatnots!
We did all this while still maintaining our usual lifestyle, quietly, muscling through it all. It’s an invisible illness, so many people don’t understand. Only a few people shared in our journey, supporting us and being there. It’s important to have someone there for you, because these illnesses definitely leave you feeling desperate and lonely. It took us a year, but we all eventually felt much better. There are still some lingering effects for each of us to this day (for example: food allergies and increased histamines to name a couple), because the bacteria wreak a lot of havoc on the body.
I read anything I can get my hands on about these illnesses. I particularly like Stephen Harrod Buhner’s books: Healing Lyme, Natural Treatments for Lyme Coinfections, and Healing Lyme Disease Coinfections. We joined our local Lyme group where we get informational emails and can go to group sessions. Lymedisease.org is a great site online to check out. We got our herbals from Woodland Essence, Green Dragon Botanicals and Wise Woman. All great resources.
Fast forward two years-- My phone rings while I’m in the car driving. It’s my daughter. She never calls me during the day, especially while in class. She’s a college student by this time. “Mom, I think something is wrong with my heart and I can’t breathe!” Dumbfounded, I tell her to go to her car and I will meet her there. I arrive at her car side to find her a sweaty mess. Her face is ashen and she is very rattled, as am I! I take her to the ED. Thank goodness it’s just down the street. It’s Covid and a checker greets us at the door. “My daughter is presenting with the symptoms of a heart attack,” I tell the person. She gets a triage nurse immediately, who in turn takes us back to a priority room. She is aghast at the readings she gets of my daughter’s heart rate and blood pressure, so she takes it a second time still not believing what she is seeing. Her blood pressure is 190/96 and a resting heartrate of 168. “Let’s get you monitored right away!” She takes us back where they do two EKGs, bloodwork, a CT of her chest in case of a dissecting aneurysm or blood clot, cardiac US and constant monitoring of her blood pressure which continues to stay in the skyrocket range despite the two different medications they give her. After eight hours of no definitive results except high thyroid levels, I ask if they could also test for Lyme disease as she has had that in the past. Unfortunately, it will take a week before those results will be back, but I feel the need to cover all bases, since we’ve been through weird scenarios before. In the end, the emergency room doctor is dumbfounded and frustrated that they didn’t come to a conclusion for us. She is reluctant to release my daughter because they are unsuccessful in getting her blood pressure down. I convince them to let us go rather than admit her like they want, because I know she will be calmer at home than in the hospital. Their final shot in the dark is they think that she might have a tumor on her adrenal gland that can cause such dramatic symptoms. I don’t believe this will be the cause, but I go with it. We don’t have any unusual cancers in our family history.
We go home and follow up with her pediatrician. The test results for the adrenal tumor come back negative, of course, so her doctor decides to send her to a cardiologist for her blood pressure and an endocrinologist for her high thyroid levels. The Lyme results also come back negative, which surprises me. In weeks to follow, my daughter’s blood pressure continues to bounce all over the place, from very low to very high. Her hands sweat profusely, like literally dripping enough to collect in a cup. During all this, of course, her anxiety ramps up. She’s not sleeping and has night terrors. It’s gut wrenching to watch and not be able to fix her. I decide to call our Naturopathic doctor who took care of us previously, because I just refuse to believe the Lyme test results are correct. Sadly, Covid has closed her office! I do research to find another Naturopathic doctor, because our experience with regular GPs, the cardiologist and the endocrinologist has gotten us nowhere. Thankfully, I find a new one.
As soon as the Naturopathic doctor sees my daughter and listens to all her random symptoms, she agrees we should retest for Lyme. Evidently, if it is too new of an infection, sometimes it doesn’t show up for several weeks, or if it's chronic Lyme. As it happens, the test results come back positive. As sad as this is to have to go through all this again, we are relieved to have a course of action.
In the end, we are not sure if this is a new infection or a flare up of the old one. Tick-borne illnesses can stay dormant for years, waiting to cause their mayhem. There are no definitive tests for that yet. Chronic Lyme is a real possibility. So, we cope and we fight and we live as positively as we can, taking one day at a time. You have to be a fighter, a self-advocate, and a researcher because these diseases are not treated in mainstream circles as well as they should be. We need to raise our voices to this fact. Research is being done on the different vector-borne illnesses, just not fast and furious enough. If the Covid pandemic taught us anything, in time of great crisis we can as a global community come together to create the cure we need. The key is we all need to come together.
#Ticks #Lyme #Bartonella #Babesia #Lyme Survivor
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